Nipah virus destroyed my personal, family, and social life: stories of the hardship faced by Nipah survivors in Bangladesh

Abstract

Background

Nipah virus (NiV) causes recurrent outbreaks in Bangladesh with high mortality and persistent health consequences among survivors. As outbreak detection and clinical management improve, the number of survivors is likely to increase, creating an urgent need for long-term clinical, psychosocial, and rehabilitation support.

Objective

To explore the lived experience of NiV survivors in Bangladesh and how physical, psychological, social, and economic challenges shape life after acute illness.

Methods

We conducted a qualitative study with a phenomenological orientation among 27 adult NiV survivors in Bangladesh. Survivors were purposively selected to capture variation in sex, age, exposure route, years since illness, and severity of acute disease. Where survivors had substantial communication difficulties or limited recall of the acute illness, caregivers provided supplementary contextual information on illness and recovery. In-person, semi-structured interviews were conducted in May 2022. Data were analysed inductively using reflexive thematic analysis with analyst triangulation to enhance credibility.

Results

Participants were interviewed between 2 and 21 years after illness. Survivors described persistent functional limitations, including fatigue, mobility and balance problems, headaches, and visual changes, as well as cognitive and emotional difficulties, including memory problems, irritability, sleep disturbance, and anxiety. These challenges altered daily routines, self-perception, and expectations for the future. Survivors also described stigma and fear of contagion in healthcare and community settings, which restricted social participation, education, and marriage prospects. Households experienced substantial economic hardship through income loss, borrowing, mortgaging land, and sale of assets to pay for treatment and recovery. Coping responses included practical adjustments and reliance on family support and religious faith, although many participants reported ongoing uncertainty about health, livelihoods, and the future.

Conclusions

Survivorship after Nipah virus infection in Bangladesh involves continuing functional, cognitive, psychosocial, and economic hardship that extends well beyond acute recovery. Priority actions include survivor-centred rehabilitation, brief mental health support, and counselling for caregivers on safe care practices. Stigma-sensitive risk communication and targeted financial support should also be integrated into existing Nipah surveillance and response systems.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12939-026-02893-0.

Introduction

Nipah virus (NiV) is a zoonotic Henipavirus (family Paramyxoviridae) that causes severe disease in humans, most commonly acute encephalitis with or without respiratory involvement [1–3]. Pteropus fruit bats serve as the natural reservoir [1–5]. Human infection occurs through ingestion of raw date-palm sap or fruit contaminated by bat secretions and through person-to-person transmission during close caregiving or exposure to respiratory secretions [6–8]. The incubation period is usually 3–14 days, although intervals up to 45 days have been reported [1–2]. Illness typically begins with fever, headache, myalgia, vomiting, and sore throat, and can progress rapidly to altered consciousness, seizures, and coma within 24–48 h, often with acute respiratory involvement [1, 2, 9]. This clinical pattern is consistent with NiV neurotropism and vasculitic pathology; human autopsy studies demonstrate infection of neurons and vascular endothelium with widespread vasculitis and parenchymal necrosis, findings consistent with high case-fatality rates and persistent neurological sequelae among survivors [10–12].

Since emergence in Malaysia in 1998–1999 and recognition in Bangladesh in 2001, NiV has caused recurrent outbreaks in South and Southeast Asia [3, 9, 11, 13]. In Bangladesh, outbreaks occur almost annually between December and April, coincide with the date-palm sap harvesting season, and are concentrated in north-western and central districts [6, 14]. Case-fatality ratios have remained high across outbreaks in Malaysia, India, and Bangladesh, ranging from 40% to 100% depending on the outbreak setting and healthcare context [9, 15]. Because of its zoonotic origin, capacity for human-to-human transmission, and absence of licensed treatments or vaccines, NiV is listed by the World Health Organization (WHO) as a priority pathogen with epidemic and pandemic potential [2, 16]. In response, the Institute of Epidemiology, Disease Control and Research (IEDCR, Bangladesh), in collaboration with icddr, b and the U.S. Centers for Disease Control and Prevention (CDC), established a hospital-based Nipah surveillance system in 2006 that has supported early case detection and outbreak response at sentinel tertiary hospitals [14]. As of 2025, Bangladesh has reported over 341 confirmed human NiV cases with an overall case-fatality rate of approximately 71% (about 29% survival), yielding a small but highly burdened survivor population [14, 17].

Follow-up studies from Bangladesh indicate persistent neurological impairment and delayed-onset complications among a substantial subset of survivors [11], with similar long-term effects reported in Malaysia and Singapore, including neuropsychiatric symptoms and cognitive impairment. In addition to physical and psychological morbidity, survivors often encounter social challenges [18]. Qualitative research and outbreak investigations in Bangladesh describe stigma and social exclusion linked to fear of contagion, caregiving exposure, and local explanatory beliefs, including in settings where biomedical transmission is understood [19, 20].

In Bangladesh, specialized neurological and rehabilitation services are concentrated in a limited number of tertiary facilities, with restricted rural access and a constrained trained workforce [14, 21–23]. Standardized post-encephalitis follow-up for both general encephalitis cases and Nipah survivors is largely unavailable, and access to multidisciplinary rehabilitation and mental health care remains inadequate [21–23]. Out-of-pocket payments dominate health financing, and hospitalization for encephalitic illness is frequently met through borrowing and asset sales, as documented in national evaluations of Japanese encephalitis care [24]. These constraints leave many survivors without the long-term support needed to restore function and social participation. This study explored survivorship experiences across both recent and long-term recovery periods to examine how the consequences of NiV infection evolve over time. Against this backdrop, a qualitative approach informed by phenomenological principles was well suited to examine not only what happens after illness, but also how survivors interpret and make sense of bodily changes, social exclusion, and uncertainty over time. This study aimed to explore how survivors of Nipah virus infection in Bangladesh experienced and interpreted life after recovery, with attention to the combined effects of long-term health problems, social stigma, financial hardship, and limitations within the healthcare system.

Methods

Study design and setting

We conducted a qualitative study with a phenomenological orientation to examine how Bangladeshi NiV survivors understood and made sense of their illness, recovery, and life after survival. A phenomenological orientation was chosen because the study sought to explore subjective experience and meaning rather than to build formal theory, document life stories as narrative chronology, or quantify predefined outcomes. We were interested in how survivors experienced bodily change, dependency, stigma, uncertainty, and altered social roles after acute infection. Data were generated through individual, semi-structured interviews conducted in Bengali and analysed using reflexive thematic analysis to identify patterned meanings across accounts while preserving attention to lived experience [25, 26].

Because NiV survivors were geographically dispersed, interviews were conducted across multiple districts of Bangladesh in survivors’ home districts rather than in facility-based settings. Locations were selected to ensure privacy and participant convenience, most often within the home or immediate household compound, and were determined by the residence of eligible survivors recorded in the surveillance registry. Interviews were completed between 16 and 31 May 2022.

Study participants

Participants were identified through the national NiV surveillance registry maintained by IEDCR and icddr, b. Two participant groups were included: NiV survivors and, where necessary, caregivers who served as contextual informants.

NiV survivors were individuals who met at least one clinical or epidemiologic criterion and one laboratory criterion for NiV infection. Clinical or epidemiologic criteria included symptoms consistent with NiV infection, documented contact with a confirmed NiV case, or residence in a laboratory-confirmed outbreak area. Laboratory confirmation required NiV RNA detection by rRT-PCR or anti-NiV IgM/IgG in serum or cerebrospinal fluid. Survivor status was verified through the National NiV surveillance platform.

Caregivers were immediate family members or close relatives or friends who had provided direct care during the survivor’s acute illness or recovery and were themselves disease-free. Caregivers were not treated as an equivalent experiential sample; rather, they were included as supplementary contextual informants when survivors had limited recall of the acute phase of illness, particularly when they had been unconscious during hospitalisation, or when caregiver accounts were necessary to contextualise acute illness and early recovery. Caregivers were identified by survivors or family members during field visits. Caregiver accounts were used only as supplementary contextual data and were not analysed as independent participant narratives.

Operational definition

Symptoms of NiV infection

Symptoms refer to those described by survivors and, where relevant, caregivers, based on their experiences across the course of illness, including the acute infection phase, treatment period, and recovery. These accounts include both immediate clinical manifestations and ongoing physical, cognitive, or emotional difficulties experienced during and after recovery.

Stigma

In this study, stigma refers to survivors’ experiences of being avoided, treated differently, or socially excluded due to their illness. This includes both enacted experiences (such as avoidance, refusal of services, or differential treatment) and perceived experiences (such as fear of rejection or anticipation of negative judgment), as described by participants in healthcare and community settings.

Ethical considerations

The study protocol (PR-18067) was approved by icddr, b’s Institutional Review Board (IRB), including the Research Review Committee (RRC) and the Ethical Review Committee (ERC). The research was conducted in accordance with the principles outlined in the Declaration of Helsinki. Because Nipah virus (NiV) infection is rare, identifiable information is maintained under the NiV surveillance protocol (PR-2005-026) within icddr, b’s secure systems in coordination with the Institute of Epidemiology, Disease Control and Research (IEDCR, Bangladesh). Following these approvals and written authorization from the surveillance program, the study team received only the minimum necessary contact information for recruitment, including name, telephone number, district of residence, sex, age, and year of illness.

All participants were adults and capable of providing informed consent. Individuals who were physically or mentally unable to participate in an interview were not included. Written informed consent was obtained from all participants prior to interviews, and participation was voluntary. In some interviews, a family caregiver was present and contributed contextual information to supplement the survivor’s account, particularly when the survivor had been unconscious or severely ill during the acute phase and was unable to recall specific events.

Data were transferred through secure channels and stored in password-protected, access-restricted systems. Personal identifiers were removed from analytic datasets immediately after enrolment. Interviews were conducted in private settings, transcripts were de-identified prior to analysis, and data retention and destruction complied with institutional requirements.

Recruitment of participants

Eligibility included age ≥ 18 years, fulfillment of the survivor case definition (≥ 1 clinical/epidemiologic criterion and ≥ 1 laboratory criterion), ability to provide informed consent, and clinical stability to participate in a 45–60-minute interview without undue risk or fatigue. Clinical stability was assessed through field-based observation and brief conversational screening by the research team, with additional input from a surveillance physician present during recruitment to confirm participants’ suitability. If a participant appeared fatigued or distressed, the interview was adjusted or not conducted.

Participants were identified through the national NiV surveillance registry maintained by IEDCR and icddr, b and were initially contacted by telephone. Individuals who expressed interest were visited at home, where eligibility was reconfirmed, study procedures were explained, and written informed consent was obtained prior to interview.

We used purposive, maximum-variation sampling [27] to ensure diversity in sex, age at illness, geographic distribution, exposure route, years since illness, and clinical severity (hospitalised and non-hospitalised). Because the adult survivor population in Bangladesh is small, we aimed to include as broad a range of experiences as possible rather than achieve statistical representation. A total of 54 adult NiV survivors were identified from the registry. Of these, 33 were purposively selected and contacted for potential inclusion. Six selected survivors were not interviewed, three because they were unavailable during the data collection period and three because they declined participation, resulting in a final sample of 27 participants. Data collection continued until sufficient informational depth had been achieved and no major new thematic insights were emerging from the interviews.

Data collection and analysis

In-depth interviews were conducted face-to-face in Bangla between 16 and 31 May 2022 by three trained qualitative researchers who had been working within the NiV surveillance platform for over 10 years. All interviewers were male and had established rapport with survivors and their families through prior follow-up visits and coordination of clinical care, which facilitated trust and openness during interviews. Before data collection, the interviewers were oriented to the study objectives, qualitative interviewing techniques, informed-consent procedures, and approaches to discussing sensitive topics while maintaining privacy and confidentiality. The interviewers also reflected on how their prior involvement in NiV surveillance and existing relationships with participants might have influenced data collection and interpretation. Interviews were conducted in private settings to ensure confidentiality and participant comfort and lasted approximately 45–60 min. All interviews were audio-recorded, and field notes were taken to document contextual details and non-verbal cues.

A semi-structured, open-ended interview guide was used to explore participants’ experiences of illness, care-seeking, recovery, and life after survival, including social, economic, and community-related dimensions. The guide was developed specifically for this study and is provided in English as Supplementary File 1.

When a survivor had limited recall of the acute phase of illness, particularly when they had been unconscious during hospitalisation, a family member who had served as the primary caregiver during the acute illness provided contextual information as an informant to supplement the survivor’s account. Interviewers used temporal prompts to support recall and ensure clarity of participants’ accounts [28].

Data were analysed inductively using reflexive thematic analysis following Braun and Clarke’s six-phase framework [29], informed by the study’s phenomenological orientation. The analysis focused not only on identifying patterns across participants’ accounts but also on interpreting how survivors made sense of their experiences, including bodily changes, dependency, stigma, and uncertainty after illness. Transcripts were prepared verbatim in Bengali and checked against audio recordings, and English translations were verified by bilingual researchers. Two researchers independently coded an initial subset of transcripts, developed a shared coding framework, and iteratively refined themes through comparison, discussion, and analytic memo-writing. Regular team discussions were used to examine interpretations, resolve differences, and strengthen analytic coherence while preserving participants’ meanings. A formal coding tree is not presented; however, the thematic structure was developed iteratively from the data and refined through repeated discussion among the analytic team. Participant checking was not undertaken because of the geographic dispersion of participants and the logistical difficulty of recontacting survivors across multiple districts.

Results

Participant characteristics

We interviewed 27 adult survivors (15 men and 12 women) aged 19–50 years at the time of data collection. Years since illness ranged from 2 to 21 years. Nine survivors had no formal education and 14 had secondary or higher education, including two with tertiary education. Nineteen survivors were married. Occupations included small-scale business, homemaking, student status, service employment, and day labourer roles. Reported exposure routes comprised person-to-person transmission (n = 14) and raw date-palm sap consumption (n = 13). Twenty survivors had been hospitalised during the acute illness; the duration of hospitalisation ranged from 2 to 66 days (median 11 days). Caregiver input supplemented survivor accounts in six interviews where recall of the acute episode was limited. Survivors were resident across 14 districts, indicating geographic dispersion in the sample (Fig. 1; Table 1).

Fig. 1.

Distribution of NiV infection survivors participating in this study

Table 1.

Background profile and exposure history

ID	Age at data collection (y)	Age at diagnosis/ NiV infection	Years since illness	Sex (M/F)	Years of education	Marital status	Occupation/role	Reported exposure	Hospitalised	Length of hospital stays (days)
S1	48	30	18	M	0	Married	Business	Person-to-person	Yes	5
S2	50	32	18	F	0	Widow	Housewife	Person-to-person	Yes	10
S3	30	12	18	M	0	Married	Day labor	DPS	Yes	2
S4	29	11	18	M	4	Married	Service	DPS	Yes	20
S5	45	27	18	F	8	Widow	Service holder	Person-to-person	No	0
S6	25	12	13	M	10	Married	Service	DPS	Yes	25
S7	42	27	15	F	5	Married	Housewife	Person-to-person	Yes	13
S8	23	5	18	F	0	Unmarried	Dependent	Person-to-person	Yes	15
S9	22	4	18	M	12	Unmarried	Student	DPS	Yes	10
S10	19	7	12	F	12	Married	Student	DPS	Yes	15
S11	28	10	18	M	12	Unmarried	Service holder	DPS	Yes	30
S12	34	16	18	M	3	Married	Service holder	DPS	Yes	16
S13	36	33	03	M	5	Married	Auto driver	DPS	Yes	11
S14	40	25	15	F	9	Married	Housewife	Person-to-person	Yes	25
S15	30	15	15	M	8	Married	Garments worker	DPS	Yes	7
S16	30	28	02	M	9	Married	Unemployed	DPS	Yes	18
S17	27	8	19	M	12	Married	Day labor	DPS	Yes	2
S18	28	9	19	F	0	Married	Housewife	Person-to-person	Yes	7
S19	39	17	21	F	0	Married	Housewife	Person-to-person	Yes	4
S20	40	30	10	F	0	Married	Housewife	Person-to-person	Yes	2
S21	39	31	8	F	0	Widow	Milk maid	Person-to-person	No	0
S22	31	23	8	F	0	Married	Housewife	Person-to-person	No	0
S23	26	18	8	F	16	Divorced	Teacher	Person-to-person	No	0
S24	34	19	15	M	9	Married	Business	Person-to-person	No	0
S25	46	30	16	M	14	Married	Business	Person-to-person	No	0
S26	33	20	13	M	11	Unmarried	Unemployed	DPS	Yes	66
S27	34	12	17	M	10	Married	Service holder	DPS	No	0

For many survivors, life after NiV was not experienced as a simple recovery. Rather, survivors described a disruption in how they understood their bodies, abilities, and social roles. Several explained that they no longer trusted their physical strength or mental capacity, which made them feel different from who they were before illness. As one survivor described, “I cannot do any work, I cannot even eat properly… I cannot stand for long, sit for long, or lie down for long.” These changes affected independence, daily functioning, and sense of self.

Family at the frontline of care

Family members constituted the primary source of care during the acute phase of infection. Immediate relatives including parents, spouses, sons, daughters, and siblings, provided direct care at home and in hospital, coordinated transport and visits, and bore the financial costs of treatment and follow-up. Survivors reported that emotional support from family members was essential to recovery in addition to clinical management. However, experiences varied; some survivors received uninterrupted support, while others reported strained relationships and persistent emotional difficulties after recovery.

Dependence on family members during illness often reshaped survivors’ sense of self within the household. While some expressed gratitude, others described feeling like a burden due to their inability to contribute physically or financially. As one survivor explained, “I am unable to work and have become a burden to my family and will always be.” Survivors described that family care influenced how they understood dependence, responsibility, and their position within family relationships.

Community responses: solidarity, fear, and making sense of illness

Community responses were mixed and shaped survivors’ experiences of recovery. Some community members avoided affected households due to fear of infection, while others expressed solidarity through visits, prayers, emotional support, and financial help. As one survivor shared, “Villagers arranged special prayers for my recovery, a gesture that exemplified their support and belief in my healing” (Survivor, female, 28 years, approximately five years since illness). Another mentioned, “All the villagers visited me in Dhaka during my treatment, reflecting their solidarity and concern.” (Survivor, female, 28 years, approximately five years post-illness).

However, fear and uncertainty were widespread. Survivors described how communities struggled to understand the illness, often drawing on local explanations. Some participants referred to beliefs that a “spiritual breeze” had passed through the village, causing sudden illness and death, while others interpreted the illness as divine will or fate. Survivors described that these beliefs coexisted with biomedical explanations provided by healthcare workers and contributed to ongoing uncertainty within the community. Survivors also reported that learning the name of the disease did not necessarily reduce fear. Even after hearing about Nipah virus from doctors or investigation teams, confusion about transmission, contagion, and long-term consequences persisted, and social distancing and avoidance behaviours often continued after recovery.

How survivors learned about Nipah virus during the outbreak

Twenty-one survivors reported that they first learned about NiV during outbreak response activities. Participants described receiving information from investigation teams and healthcare providers about likely sources of infection, routes of transmission, the contagious nature of the disease, and the possibility of person-to-person spread. Several also recalled being informed about possible long-term health consequences following recovery. Despite receiving this information, some participants reported continued uncertainty regarding the illness and its long-term effects. One participant noted that no clear explanation was provided during the outbreak response.

Rumours and local explanatory models during outbreaks

Outbreaks were accompanied by rumours and community-based explanations of illness that participants described as meaningful within their local context. Participants described escalating fear as deaths occurred and beliefs that framed Nipah virus as a malevolent or supernatural force, including references to an “evil breeze” or a “ghostly entity”. One survivor described how people in the village believed that a harmful breeze had passed through the area, bringing sudden illness and death.

Participants reported that these beliefs were associated with fear-driven behaviours within communities, including temporary relocation, avoidance of affected households, and reduced social contact with survivors and their families. Survivors described that these rumours and local explanations influenced how people in the community responded to illness and to affected households.

Long-term physical sequelae and functional impairment

Survivors of NiV infection described enduring physical health problems that disrupted everyday life. Many reported persistent fatigue that limited the resumption of usual roles. Mobility was commonly affected, including difficulty with walking, unsteady gait, and reduced tolerance for prolonged standing. Joint pain, particularly in the knees, was frequently noted. Several participants described sustained weakness that required frequent rest during routine activities. Vision problems, including blurred vision and ocular pain, and recurrent headaches were also reported.

One survivor stated, “I am unable to perform basic tasks such as cooking or maintaining a prolonged standing, sitting, or lying position.” (Survivor, female, 50 years, approximately 18 years post-illness). Four of the 27 survivors reported physical disability that required assistance with activities of daily living. Others described difficulty riding a bicycle and walking on wet surfaces. Some survivors described these difficulties in terms of reduced control over their bodies, including shaking of hands and legs and a sense of instability while walking. Survivors reported that these physical problems made everyday tasks difficult to perform independently.

Cognitive, emotional, and social consequences of NiV survival

Participants also described changes in cognition and speech, such as slowed thinking and difficulty finding words. Some reported a lasting sense of restlessness during the recovery period. Survivors and their family caregivers described difficulties that affected daily functioning and social participation, including problems with memory, changes in mood, disrupted sleep, and stress associated with bereavement and community loss.

Approximately nine of 27 participants reported memory problems that interfered with schooling or work, such as short-term recall difficulty and trouble retrieving past events. Participants also described increased introversion, irritability, and reduced emotional stability, which limited engagement in family and community life. Sleep disturbance was frequently reported and included nocturnal anxiety, nightmares, and persistent restlessness that contributed to daytime fatigue and reduced concentration. Several accounts referred to behavioural changes linked to these difficulties, including reduced tolerance for complex tasks and occasional self-directed speech. Experiences of stress and trauma were common among participants who had witnessed the deaths of family members during outbreaks. Although many participants described persistent cognitive, emotional, and behavioural difficulties, a smaller group of eight survivors who recalled only a mild acute illness without neurological symptoms reported no lasting psychological or cognitive effects.

Participants described constrained social participation, a sense of being set apart, and altered identity within families and communities. Several survivors reported isolation, shrinking social networks, and rejection of marriage proposals because of perceived contagion or disability. “The Nipah virus destroyed my personal life, family interactions, and social relationships. I am unable to work and have become a burden to my family and will always be.” (Survivor, male, 30 years, 2 years since illness). Schooling disruptions were reported for approximately six of the 27 participants or their family members. One caregiver described a teacher refusing to readmit her son to school due to safety concerns for other students. “A teacher informed me that your son cannot attend this school. Instead, take him home and find some work for him. We must ensure safety of other students” (Caregiver, female, 50 years). Survivors reported feeling different from others and described concerns about how they were perceived within their families and communities.

Livelihood loss and household debt

Illness from NiV infection and recovery imposed substantial and enduring financial burdens on survivor households. Seven of 27 survivors reported loss of employment. Three described downsizing businesses or borrowing to restart. Fourteen reported selling assets, including rickshaws, livestock, or agricultural land, to pay for treatment or repay debt. Eleven participants reported mortgaging cultivable land and seeking financial assistance from neighbours, banks, or non-governmental organizations. One survivor stated, “We had farming lands but had to sell all of it for my treatment” (Survivor, male, 34 years, 18 years since illness). Some survivors reported that ongoing physical weakness limited their ability to return to previous work, contributing to continued financial difficulties after recovery. Survivors described income loss, treatment costs, borrowing, and sale or mortgage of assets during recovery, with some reporting prolonged financial dependency.

Bereavement, role change, and household vulnerability

Eleven of the 27 survivors reported the death of at least one family member from Nipah virus infection, including several who lost primary earners. These deaths often triggered profound social and economic disruptions within households. One female survivor described assuming full financial responsibility for her mother and school-aged sister after her father’s death, which created conflict with her husband’s family and ultimately led to divorce. Subsequent remarriage proposals failed because prospective partners viewed her continued caregiving responsibilities as a burden. She explained, “After my father died, I had to take responsibility for my mother and sister. Because of this, no one wanted to marry me, as they thought I would always have this burden.”

Another male survivor, previously employed as a manager in a family business, reported difficulty finding work and securing a partner following illness-related cognitive and mobility limitations. He relied on relatives for financial and emotional support and described persistent feelings of dependency and distress. He stated, “I was working as a manager at my maternal uncle’s hardware shop before, but after the illness I could not continue. Now I depend on my family for financial and emotional support.” Survivors described that bereavement, disability, and income loss occurred together and influenced changes in household roles and responsibilities, contributing to increased vulnerability within families.

Stigma and social exclusion in care and community settings

Participants described avoidance, differential treatment, and delays in care within health facilities, often attributed to staff fears of infection. One survivor noted, “No doctor was available during that difficult period. They administered saline once and left, never returning to check on my health” (Survivor, male, 36 years, three years since illness). In communities, survivors reported social exclusion and reduced mobility, including transport refusal and curtailed visits. As one 46-year-old survivor stated, “Rickshaw pullers refused to transport passengers from my village, and outsiders avoided visiting us.” Such experiences were frequently linked to rumours and local beliefs that circulated during the outbreak, and these attitudes persisted even after health officials communicated that there was no ongoing risk of transmission from survivors. Survivors described that these experiences limited their ability to move freely and interact with others in their communities after recovery.

Discussion

This study suggests that survival following Nipah virus (NiV) infection in Bangladesh is not experienced simply as survival after an acute infectious episode, but as an ongoing reorganisation of bodily capacity, emotional life, family role, and social position. Survivors described long-term functional limitations, cognitive and emotional difficulties, stigma in healthcare and community settings, and substantial household economic hardship. Family caregiving emerged as a central element of survival and recovery, while community responses ranged from avoidance to solidarity. Taken together, these findings indicate that recovery after NiV extends well beyond clinical convalescence and is lived through altered dependence, uncertainty, and disrupted social belonging.

Survivors’ descriptions of persistent neurological and functional problems are consistent with evidence that NiV and other encephalitic illnesses can cause enduring neuropsychiatric and functional sequelae [11, 17, 18]. Rehabilitation studies indicate that structured post-acute rehabilitation improves outcomes, yet such services remain scarce in low-resource settings [30, 31]. In this context, participants’ accounts of fatigue, mobility restriction, and cognitive decline emphasise the urgent need for accessible rehabilitation beyond tertiary hospitals [18, 31]. Our findings further show that these consequences were experienced not only as physical deficits, but also as changes that affected survivors’ confidence, autonomy, and sense of self. Survivors’ accounts of no longer feeling physically dependable, “normal,” or socially secure suggest that the burden of NiV cannot be understood only in biomedical terms; it must also be understood as a lived disruption to personhood and everyday functioning.

Participants reported stigma and social exclusion across clinical and community settings, commonly driven by fears of contagion and rumour, aligning with earlier Bangladeshi studies that advocate risk communication incorporating local explanatory models and credible community messengers [19, 20]. Importantly, the findings suggest that stigma was not limited to overt rejection. It was also experienced through practical exclusions, such as reluctance to provide care, restrictions on mobility, school exclusion, and strained marriage prospects. In this sense, stigma shaped not only how survivors were treated, but also how they understood their own place within family and community life. Accordingly, outbreak response strategies should include early engagement of community and religious leaders, culturally appropriate messaging, and routine documentation of stigma-related experiences through survivor follow-up, community feedback, and reports of care avoidance or social exclusion to enable timely adjustment of communication and service delivery [20].

Economic hardship was prominent. Participants reported job loss, business contraction, borrowing, mortgaging land, and selling assets to pay for treatment and recovery. Although NiV-specific cost data are limited, evidence from related neuroinfectious diseases in Bangladesh demonstrates high out-of-pocket costs for acute and post-acute care [24]. The dual burden of lost income and medical expenses explains the widespread indebtedness observed in survivor households. Our findings also suggest that financial hardship was not merely a downstream consequence of illness; it was tightly linked to persistent weakness, impaired mobility, cognitive difficulty, and changing household roles. Survivors’ inability to resume work often intensified dependence on family members, which in turn affected dignity, decision-making power, and perceived social worth. These findings support the inclusion of social protection measures in outbreak preparedness, including transport vouchers, fee waivers for rehabilitation, and temporary cash or in-kind assistance for affected families, to mitigate financial vulnerability [24].

The wide variation in time since illness also suggests that the consequences of NiV survival may persist and evolve long after acute recovery. Several participants interviewed many years after infection continued to describe altered family responsibilities, disrupted education or marriage opportunities, dependency on relatives, and ongoing economic insecurity linked to persistent physical or cognitive difficulties. These accounts indicate that, for some survivors, the effects of illness were not experienced as short-term health problems but as enduring disruptions that became part of household roles, livelihoods, and social identity. The findings further suggest that experiences of survivorship after NiV infection may differ over time, with longer-term consequences extending beyond health into social and economic life. Longitudinal research would help clarify how these experiences develop and shift across different stages of survivorship. To address stigma and healthcare avoidance, routine training for primary-and secondary-level healthcare workers in Nipah-affected districts should focus on transmission pathways, infection prevention and control (IPC) practices, and clear patient-flow procedures. Several survivors recalled that hospital staff avoided close contact due to fear of infection. Ensuring regular IPC training, supported by consistent supplies of personal protective equipment (PPE), could reduce fear, enhance provider confidence, and promote continuity of care during outbreaks. These measures align with WHO IPC guidance and experiences from other infectious disease settings [19, 32, 33]. At the same time, improving clinical readiness alone is unlikely to be sufficient unless the subjective experiences of fear, uncertainty, and social isolation among survivors are also addressed.

A coordinated multidisciplinary approach is essential. Integration of clinical care, rehabilitation, mental health, and social support, together with engagement of community and religious leaders, aligns with the needs identified in this study. Although this research did not evaluate intervention outcomes, it provides a clear rationale for piloting and prospectively assessing survivor-focused models in Bangladesh [20, 23, 34–36]. Participant accounts also emphasised the role of family members as frontline caregivers, consistent with outbreak investigations showing that relatives frequently provide bedside care with minimal infection-prevention and control support, which increases the risk of secondary transmission [37–39]. Including caregivers in infection-prevention counselling and outbreak response planning could substantially reduce household exposure. Community responses ranged from fear-driven avoidance to solidarity expressed through visits, collective prayers, and material assistance. Accordingly, risk communication should address fear and support reintegration through locally co-developed messages delivered by credible community figures [19, 20].

From a phenomenologically informed perspective, the main contribution of this study is not simply to document that NiV survivors experience physical, psychological, social, and economic challenges, but to show how these challenges are lived as interconnected disruptions. The findings indicate that survivors often understood their post-illness lives through altered dependence, diminished confidence, strained belonging, and uncertainty about future roles. Identity shifts, anxiety, and feelings of isolation were not peripheral experiences; they were central to how survivorship was interpreted. This helps explain why even survivors who were no longer acutely ill continued to describe recovery as incomplete.

These findings suggest that NiV preparedness and recovery strategies in Bangladesh should prioritise survivor-centred rehabilitation and brief, scalable mental health interventions. Referral pathways linking Upazila Health Complexes (sub-district level primary healthcare facilities in Bangladesh) to district and tertiary centres, together with task-sharing models, can expand service coverage where specialist capacity is limited. Upazila Health Complexes also provide a platform for regular IPC training, reliable provision of PPE, and family counselling on safe caregiving, which can reduce avoidance in facilities and reduce exposure in households. Risk communication should be co-designed with community partners and informed by ongoing survivor and community feedback to ensure that messages remain responsive and evidence-based. Establishing coordinated service models that connect primary healthcare, rehabilitation, mental health, and community support within existing surveillance systems would enhance resilience and equity.

These qualitative findings should be interpreted with caution considering the study design and sampling approach. The purposive sample and use of absolute counts are descriptive and intended to highlight common themes rather than estimate prevalence or support causal inference. Participants were survivors who were reachable at follow-up; individuals who later died are not represented, introducing survivorship bias. In addition, survivor narratives may have been shaped by the passage of time, experiences of trauma, and the social presence of interviewers. Some participants were recounting events that occurred many years earlier and that were closely tied to fear, bereavement, and uncertainty, which may have influenced what was remembered and how it was narrated. Because interviewers were already known to many survivors through prior follow-up activities, this familiarity may have facilitated openness in some cases, but it may also have shaped how experiences were presented. These influences should be considered when interpreting the findings. Although these findings are grounded in the social, cultural, and healthcare context of Bangladesh, several issues identified in this study may have relevance for other resource-constrained settings affected by severe infectious diseases. These include stigma linked to fear of contagion, prolonged dependency after neurological illness, reliance on family caregiving, limited access to rehabilitation, and financial hardship during recovery. However, the meanings attached to illness, caregiving, social exclusion, and recovery are shaped by local social and health-system contexts, and the findings should not be assumed to apply uniformly across settings. Finally, the cross-sectional design of this study did not allow examination of how survivorship experiences changed over time; longitudinal research is needed to better understand these longer-term processes.

Conclusion

This study suggests that survivorship after Nipah virus infection in Bangladesh is experienced as an ongoing condition marked by persistent physical limitations, neurocognitive and psychosocial difficulties, stigma in healthcare and community settings, and substantial household economic hardship. Survivors’ accounts further indicate that these challenges are interconnected and are often experienced through altered dependence, uncertainty, and disruption of social roles and relationships.

The findings highlight the potential value of survivor-centred rehabilitation and brief, scalable mental health support delivered through referral pathways linking primary, secondary, and tertiary healthcare services. Strengthening IPC training, ensuring access to PPE, and including caregivers in counselling on safe caregiving practices may help improve preparedness and reduce fear and avoidance during outbreaks. Risk communication informed by survivor and community experiences may also support trust and social reintegration. In addition, temporary financial support during recovery, such as transport assistance or fee waivers, may help reduce financial strain on affected households. Integrating these approaches within existing surveillance and outbreak-response structures could support more comprehensive and equitable survivor care in Bangladesh.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

CDC

Centers for Disease Control and Prevention

CSF

Cerebrospinal fluid

DPS

Date Palm Sap

IgM

Immunoglobulin M

IgG

Immunoglobulin G

IEDCR

Institute of Epidemiology Disease Control and Research

NGO

Non-governmental organization

NiV

Nipah virus

PCR

Polymerase Chain Reaction

PTSD

post-traumatic stress disorder

WHO

World Health Organization

Author contributions

Conceptualization: Utpal K. Mondal, Syed Moinuddin Satter, Dewan Imtiaz Rahman, Md. Wasik Rahman. Data Curation: Utpal K. Mondal, Dewan Imtiaz Rahman, Arifur Rahman Bablu, Mohammad Ariful Islam, Muhammad Rashedul Alam, S. M. Zafor Shafique. Formal Analysis: Utpal K. Mondal, Dewan Imtiaz Rahman, Arifur Rahman Bablu, Mohammad Ariful Islam. Investigation: Utpal K. Mondal, Md. Wasik Rahman, Arifur Rahman Bablu, Mohammad Ariful Islam, Michael Selorm Avumegah, John D. Klena, Ziaur Rahman, Mustafizur Rahman, Stephen P. Luby, Joel M. Montgomery Methodology: Utpal K. Mondal, Dewan Imtiaz Rahman, Arifur Rahman Bablu, Mohammad Ariful Islam, Md. Wasik Rahman, Stephen P. Luby. Project Administration: Utpal K. Mondal, Arifur Rahman Bablu, Mohammad Ariful Islam, S. M. Zafor Shafique, Md. Wasik Rahman, Kamal Ibne Amin Chowdhury, Syed Moinuddin Satter, Selorm Avumegah, John D. Klena, Ziaur Rahman, Mustafizur Rahman, Joel M. Montgomery, Sayera Banu. Resources: Utpal K. Mondal, Md. Wasik Rahman, Syed Moinuddin Satter, Michael Selorm Avumegah, John D. Klena, Ziaur Rahman, Joel M. Montgomery. Software: Dewan Imtiaz Rahman, Arifur Rahman Bablu, Mohammad Ariful Islam, Muhammad Rashedul Alam. Supervision: Utpal K. Mondal, Md. Wasik Rahman, Kamal Ibne Amin Chowdhury, Syed Moinuddin Satter, Ziaur Rahman, Mustafizur Rahman, Sayera Banu. Validation: Utpal K. Mondal, Dewan Imtiaz Rahman, Arifur Rahman Bablu, Mohammad Ariful Islam, Muhammad Rashedul Alam, S. M. Zafor Shafique, Kamal Ibne Amin Chowdhury. Visualization: Utpal K. Mondal, Dewan Imtiaz Rahman, Md. Wasik Rahman, Kamal Ibne Amin Chowdhury, Syed Moinuddin Satter, Stephen P. Luby. Writing- original draft: Utpal K. Mondal, Dewan Imtiaz Rahman. Writing- review and editing: Syed Moinuddin Satter, Md. Wasik Rahman, Michael Selorm Avumegah, John D. Klena, Ziaur Rahman, Mustafizur Rahman, Stephen P. Luby, Joel M. Montgomery, Sayera Banu.

Funding

This research was funded by the Coalition for Epidemic Preparedness Innovations (CEPI).

Data availability

The data used in this study can be made available upon reasonable request to the corresponding author.

Declarations

Ethics approval and consent to participate

This study received ethical approval from icddr, b’s Institutional Review Board, including the Research Review Committee and the Ethical Review Committee (Protocol PR-18067). All participants were fully informed about the study objectives and their rights, including voluntary participation and the right to withdraw at any time without consequences. Written informed consent was obtained from all participants prior to participation.

Consent for publication

Written informed consent for publication was obtained from all participants. Participants explicitly consented to the publication of their personal narratives, clinical details, and any potentially identifiable information, including images where applicable. Nipah virus infection is a notifiable condition in Bangladesh, and survivors are identified and followed through a national hospital-based surveillance system. As a result, participants’ identities were already known within their communities and to health authorities. All participants were adults and provided permission for disclosure of their identity if required.

Patient and public involvement

Patients and the public were not involved in the design, conduct, reporting, or dissemination of this research.

Competing interests

The authors declare no competing interests.